CALLING ALL STAGE I SISTERS
Comments
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The National Lymphededma Network has a position statement on this:
"Air travel presents several considerations for individuals with lymphedema and for those at risk for lymphedema. It is
the position of the National Lymphedema Network that:
• Individuals with a confirmed diagnosis of lymphedema should wear some form of compression therapy while traveling by air.
• Individuals at risk for developing lymphedema should understand the risk factors associated with air travel and should make a decision to wear compression based on their individual risk factors."0 -
I bought a couple of compressin t-shirts, short and long sleeve. I wear whenever I fly and remove about and hour or two after I'm on the ground. figure its good insurance. I bought men's as the ladies seemed too high cut and constrictive under the arm. I wear a ladies large and bought a men's medium.
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Updated info from my daughter (who's a physician). Here are some cites that may had clarity:
5% incidence of lymphedema 5 yrs after SLN biopsy, 0.5% severe lymphedema, (vs. 16% and 3% with full axillary LN dissection), more likely if overweight or infection/injury in the involved arm. Risk of lymphedema seems steepest in first 3-5 yrs, then stabilizes (for full ALND) at ~1%/year out at least 20 yrs. http://www.ncbi.nlm.nih.gov/pubmed/18838709
"Recent publications have begun to assess the validity of the more commonly listed precautions (such as avoidance of exercise and air travel) and found no relationship between these precautionary behaviors and the development of lymphedema." http://www.ncbi.nlm.nih.gov/pubmed/18838708
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Hi ladies I've been missing all of you. So much to read and catch up on. I say every time I check in that I won't be gone long, but truthfully this nightshift is still whooping my butt! There just isn't enough hours in the day and I just got off working an 8 day stretch without a day off. Well till last night that is and it's back to work tonight. A couple of those days were 12 hr shifts too! Anyway I hope all of you have been well. Congrats Val on the new D&B purse
I have a few and love them! I have a mammo coming up when I see my Med Onco in November. Gotta call and check with them to see if my ins. will pay since it will be 2 wks earlier than when I had it last yr. I was told last yr have to wait a yr and a day for routine screenings. I really don't understand how once you've had breast cancer any mammo is ever routine? would it not always be diagnostic? that is what I have to call my onco about. I know my plastic surgeon said he could get me one scheduled and wouldn't have any problems with the ins company. hmmm?! how can he know how to do it and the other drs haven't a clue... makes completely no sense. I guess I'll find out. Take care and I hope to chat again soon.0 -
While I appreciate the post and link, I must warn you that somebody recently PM'd me and said they developed LE after a flight. They were TWENTY trs out!
I had 2 clear nodes out , NO rads and after 3 weeks I noticed something different about the breast ( LE) . After 4 mos, my rings didnt fit. Now at 6mos DRs are finally seeing the arm measuremnt is bigger.
VERY LOW risk here. No flights/ NO repetetive activities, NO radiation.....
PLS. Dont take any chances.
Fly with compression and peace of mind!
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Val, LOL just got home from work awhile ago and needed the laughs.
Mimi, i hope all goes well with your appointment. I don't get these coverage rules for BC patients. Get around it if you can.
I'm with you on those long days....I worked from 8 AM to 9:30 pm today, and have to be back at work before 8 AM tomorrow. Am tired and it does not leave much time for anything else. I see my RO in Nov. and am not sure what that will accomplish...but I am still undergoing changes even 10 months out from rads. I noticed you are at 3 years from dx and surgery. Wow, that's a big milestone. So glad you are doing well...I hope your checkups are uneventful. Are you on Tamox or A.I.s?
Good to hear from you :-)
Joan8110 -
Purple32 - you are right to note that data are data and that they represent a population that has been studied. Individuals must make their own judgments since none of us know how our individual bodies will react.
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Yep.... youre right 301724
I would be upset myself if I was considering the no sleeve flight and someone LATER posted the message I just sent.
I couldnt skip over it !
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FYI here is some info from the Stepup-Speakout site:
http://www.stepup-speakout.org/Controversial Studies on Compression Garments when Flying.htm
http://www.stepup-speakout.org/Weightlifting and Lymphedema.htm
A lot of material but well worth reading and understanding before making your decisions about flying and exercise.
Well-fitted sleeves, in my opinion, are some of the best insurance we have to protect ourselves.0 -
Yay ValJean!!! Hugs to you! My annual is coming up as well in November.
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Hi there! I have to post this question. I am confused. I had Stage 1 IDC, Grade 1. 0/9 nodes. I had a double mast. Sept 4th of this year. Now tamoxifen. I am wondering if there is other cancer in me? You get a full body scan with other stages. My dr. told me it was not necessary. AND when I go back to MO how will they test me? if not a full body scan...blood work? I feel like I am left hanging....Do any of you have any reassuring words or anything I should do to assure this does not reappear somewhere else in my body. I did the double to make sure it won't reappear in my breasts. I know I am lucky my cancer was stage 1 but I feel pushed aside.
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I think they assume stage 1 grade 1 is unlikely to have spread anywhere. I know what you mean tho. So far, they have only done breast exams. I'm supposed to have a mammogram in Feb. There's a fair amount of radiation involved with scans, so perhaps they think the risk/benefit says not to do them unless necessary. I'll be interested to see what others post.
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My MO does blood work when I go to him. Measures tons-o-stuff; some I could distinguish -blood counts, cholesterol levels and such, but others were acronyms for tests I didn't recognize. My husband's new tumor was found after his cholesterol levels changed. Who knew? I did have a bone scan after my dx but I have bone issues, so it was more of a precautionary measure not a routine test.
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Kim, for me, I have had two diagnostic mammograms and bloodwork at my four follow up meetings with my mo and ro. I see one of them every 3 months, although that has been moved to 4 months. I have a seroma, so I will continue to have a one sided diagnostic mammogram until that goes away, but otherwise no other tests (other than a routine mamm on my "good" side) unless I have symptoms.
It seems that with our early stage and no lymph node involvement, we're NED unless we have symptoms or something shows up on a routine test. I know, it's a little disconcerting and kind of like we've been patted on the head and sent on our merry way.0 -
I go every three months as well. I have my blood work a week before. I'm due for my mammogram (6mo mark). Not looking forward to that.
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Just curious, did anyone's oncologist have the Oncotype DX test done on their specimen to see if chemo would be beneficial? At my appt today she said she is 99% that with the path results I have I won't need chemo but she wants it to be 100% and this test will get her to that point.
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Both my BS & MO were certain I would not need chemo. They were setting me up for radiation & AI only; did the onco test "Just to be sure" Wow-were they surprised. So I did chemo. (But I had pretty much decided that I was going to ask for chemo anyway just to throw any & all at the beast, so the test was pretty much a moot point.)
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My path report looked straight forward. Big surprise to find my Oncotype DX score was 27. I opted for chemo.
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Mine ordered the onco-type and the benefit risk ratio indicated chemo was not needed. I did just surgery and rads.
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Mine was a surprise too, 26. So, chemo for me.
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I got the biggest surprise when my onco score was 10....i told the dr.i would not do chemo and THANK GOD I didnt have to....had to do the rads tho.
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Mini
Will your INS cover a 6 mos mammo ?!
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Normally no, but becauseof the bc I believe they will. They're calling to find out.
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wow!
Mine would not.0 -
Kim556644, I don't think you are alone in being confused. This is probably from reading about others with a similar Dx as yours, only to find that the follow-ups really vary depending on your docs personal preference. Some docs will order a scan (usually bone scan or CT, not PET usually) on an early-stage woman with no nodes involved. They sometimes do this just to have a baseline for you. Some docs will not bother with a scan, unless you have pain or a symptom of some kind. Some docs like to test for tumor markers in your blood, even if you are early-stage. Some do not do this for early-stage. Your medical oncologist WILL do routine bloodwork (CBC) on you, and that alone can reveal a lot and be an early warning system.
From what you wrote, you won't be getting mammograms, and may or may not get ultrasound. This could depend on where your tumor had been located, or factors individual to you. You should be getting the clinical breast exam every six months, for at least a couple years (but the length of time varies from doc to doc on this also.)
The ODDS on your cancer returning is LOW. How low? I heard about 2-5% for mastectomy. Can't be more reassuring than that, and you will by now have noticed that the docs don't hand out guarantees to any of us. I do know what you mean about being pushed aside, since you were in the "lucky" early-stage group. I swear, the nurse that gave me my early-stage Dx was practically smiling when she told me. Hip, hip hooray, right? (But I do understand how delivering that message is a lot more hopeful than telling someone they are Stage IV, so I get it.)
It's hard to convince someone as newly diagnosed as yourself, that it is possible for the day to come when you will not even think about cancer once. I don't mean forget it, but just not give it the time of day. It takes time to get to that point, but that is the horizon we all look toward.
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Granny, I sent you a PM tonight...if you are still around.
kim, I asked about body scans and was told no - that it could give false positives.
Blood tests may include tests for cancer markers. When pathology is done, they look for cells away from the original site. Studies have shown that cancer recurrence from a single primary site usually occurs close to the
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Good summation Elimar.
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Joan811 I was on Tamoxifen 20mg to start with (didn't want to take the AI's because of side effects and I have had a total hysterectomy almost 11 yrs ago now), but started having some negative side effects from the the Tamoxifen and the MO talked me into trying Arimidex. I took it for about 6 mos. and began to have terrible side effects and my hair was coming out quite a bit and last Dec. I got really sick with some kind of stomach ailment... I had a bout of diarrhea for about 6 weeks and lost 20 lbs, went in the hospital, they did test and found nothing wrong me. They put me on Prilosec and I continued to take the Arimidex. My stomach problem reverted to severe constipation and weight gain and now my hair was coming out in handfuls. LOL! I went and saw my MO we had a long discussion because I had actually taken myself off Arimidex for over a 6 weeks and had stopped the Prilosec as well. I agreed to try Tamoxifen again at a lower dose 10mg and I started taking Biotin. I now have no side effects and have a healthy head of hair. I'm just over weight haha!!!
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Well said elimar.
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Sheeee-la, Were you in the path of the hurricane? Hope all is well and that you kept your power.
Joan811, You must have gotten well acquainted with Hurricane Sandy...did you have to evacuate?
Hope all the East Coast sisters managed to get thru' the storm. I don't know how that will be for sisters trying to get treatment this week in the NYC area.
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